- European Multiple Sclerosis Platform

EMSP Web Alert
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THE UNDER PRESSURE PROJECT OPENED ITS VIRTUAL HOME:
600 TESTIMONIALS ON MULTIPLE SCLEROSIS
EMSP and its partners launched, on 29May,
the multimedia website
http://www.underpressureproject.eu, which
reveals sharp discrepancies in the treatment,
employment and empowerment of people
with multiple sclerosis (MS) across Europe.
The new website brings personal stories that enhance the data captured by the MS Barometer and
also provides assistance in organising Under Pressure exhibitions. The website hosts around 600
evocative photos that tell the stories of people with MS from 12 European countries, offering some
enthralling videos from Belarus, Germany, Italy and the UK. Read more
WORLD MS DAY 2013
The launch of the Under Pressure
website marked World MS Day 2013, a
Multiple Sclerosis International
Federation (MSIF) awareness-raising
initiative taking place every year on 29
May. Since 2009, World MS Day has
reached hundreds of thousands of
people in 67 countries. It is estimated
that 2,5 million people live with
multiple sclerosis throughout the world
– 600,000 of them in Europe.
This year, World MS Day was focused on youth, illustrating the effects that multiple sclerosis can
have at an age when most people start careers and families. The Under Pressure project captures
such dilemmas and emotions: Martina’s story sends out the signal that access to treatment and
EMSP Web Alert
therapy, as well as employment and social support can help those with MS lead an active, fulfilled
life.
Together with EMSP, MS societies from countries like Poland, Hungary and Estonia also marked
World MS Day by holding events focused on advocacy and awareness-raising.
The Hungarian MS association organised, on 29 May, an outdoor exhibition in the centre of the
capital Budapest, combining Under Pressure pictures with photos taken in Hungary. A total of 66
pictures were placed on 24 exhibition displays and were viewed by around 120 participating multiple
sclerosis patients, carers, neurologists and health authorities, and by hundreds more passers-by.
Read more
The Polish MS society moved the celebration of World MS Day on 4 June. The special guest was the
EMSP’s Executive Committee member and Youth Representative, Emma Rogan. The organisers
staged a debate – hosted by the Polish Ombudsman – on matters concerning young people with MS,
such as employment, relationships and making the diagnosis public. Read more
Street exhibition in Milan (Photo: Carlos Spottorno)
The MS society from Italy –
Associazione Italiana Sclerosi Multipla
(AISM) – organised two Under
Pressure street exhibitions in Milano
and Rome, from 20 May to 2 June.
The aim of these initiatives was to
educate the national public on the
situation of persons living with MS in
Europe, with students and young
people being the main intended
recipients.
EUROPEAN MONTH OF THE BRAIN
May 2013 was named the European Month
of the Brain (EMOB) by the European
Commission. A variety of players took the
opportunity to organise awareness-raising
events on disorders of the central nervous
systems in a number of European cities.
EMSP Web Alert
Taking place at the beginning of the EMOB, on 3-4 May in Brussels, EMSP’s Spring Conference
provided its members and partners with further insight and incentive to fight for better access to
treatment, care and social support for people with MS in Europe.
Around 100 participants were able to draw from the
experience of key speakers such as: John Golding,
President of EMSP; Peter Feys, President of
Rehabilitation in Multiple Sclerosis (RIMS); Sir Nick
Partridge, CEO of Terrence Higgins Trust fighting HIV/
AIDS in the UK; or Emma Rogan, EMSP Youth
Representative and ‘Vodafone World of Difference
Winner’ in 2012. In thematic workshops, participants
exchanged experience and assessed ways forward in the
areas of effective lobbying, cooperation with industry
and employment for young people with MS. The two-day
conference was concluded with a festive Gala Dinner,
which provided everyone involved with an excellent
networking opportunity and an outstanding musical
recital by twin classical singers Clara and Nina Kanter,
accompanied by pianist Olga Bobrovnikova.
There were positive and encouraging reactions to the Spring
Conference. In the follow-up survey, one of the participants
called it an “excellent event” and some of the others added
that they would have liked more time to prepare for and
discuss during the workshops included in the programme.
Thoughts after
EMSP’s Spring
Conference:
“The information
being shared was
very valid and
driven towards
action.”
“It was an
excellent event the programme,
the speakers, the
good ideas and the
group spirit and
willingness to
move towards
something
meaningful.”
PARTNER EVENTS
Maggie Alexander, EMSP CEO (pictured right)and
Barbara Quilez, Editorial Coordinator at the
European Parliament (Photo: Vivian Hertz)
On 7-8 May, the European Federation of
Neurological Associations (EFNA) held a
Pledge signing event in the European
Parliament. 19 Members of the European
Parliament pledged to join the cause of
supporting essential investment in
neuroscience research and protecting the
interests of neurology patients. EFNA
launched this “call to arms” stating that the
cost of treating brain disorders in Europe is
estimated at 800 billion euros per year, with
a strong possibility that it will rise rapidly
over the next decades because of the
continent’s aging population.
EMSP Web Alert
The European Patients Forum (EPF) marked its first decade with a three-day event which took place
in Dublin, on 22-24 May. On this occasion, EPF elected new members of its board in an Annual
General Meeting and organised its 10th Anniversary Conference.
The event was attended by European Commissioner for Health and Consumer Policy, Tonio Borg,
who highlighted the need to generate new knowledge and innovation in brain research: “Some 165
million Europeans are likely to experience some form of brain-related disease during their lifetime.
As the population ages, the incidence of brain
related diseases is likely to increase. Finding ways
of preventing and treating them is therefore
“Truly excellent
urgent.” The Commissioner also reminded the
audience that, starting with 2007, the EU
campaign. The quality
Seventh Framework Programme invested 2
of the individual photos
billion euros to support brain research-related
is stunning.”
projects.
Health Commissioner
Tonio Borg describing
the Under Pressure
project
At the sidelines of the EPF event, Tonio Borg met
with EMSP Deputy CEO and Head of External
Relations, Christoph Thalheim, and congratulated
him on the Under Pressure project: “Truly
excellent campaign. The quality of the individual
photos is stunning.”
European Commissioner Tonio Borg (pictured right)
with EMSP’s Deputy CEO Christoph Thalheim.
They are both holding an Under Pressure booklet
EMSP Web Alert
John Golding pictured in front. From right to left :
Irish Minister for Health Dr. James Reilly TD,
European Commissioner for Research, Innovation
and Science Máire Geoghegan-Quinn,
Congressman Patrick Kennedy, Audrey Craven
President European Federation of Neurological
Associations, Tracey Courtney, Carer for Brain
disorders
Dublin was again the point of focus for
EMSP on 27-28 May, when the Irish EU
Presidency organised a conference on
“European foresight policy for brain
research”. EMSP was represented by its
President, John Golding. In his speech, Mr
Golding, himself living with progressive
MS, said that “what is of most importance
for a well-functioning life with a brain
disorder, in the absence of effective
treatment, is an activity or life plan. My
plan includes medication, training and
physiotherapy, three-four times a week,
and an adequate diet.”
Earlier this year, EMSP rallied to the international efforts aiming to boost the fight against
progressive MS, a form of multiple sclerosis for which there is currently no disease-modifying
treatment available. In 6-8 February, EMSP’s President John Golding participated in the “First
Scientific Conference of the International Progressive Multiple Sclerosis Collaborative”, an event
set up by MSIF at the request of the MS societies from the USA, Canada, UK, the Netherlands and
Italy (represented at the event by AISM CEO Antonella Moretti). John Golding took this opportunity
to ask for common efforts to enhance the research in progressive MS.
“If we are to move forward in this field of
progressive MS research, it is important that all
interested parties collaborate - all MS societies,
governments, private foundations, the
pharmaceutical industry, yes, all! International
teamwork and cooperation is essential. Primary
and secondary progressive MS have been the least
studied of the different clinical types of multiple
sclerosis.”
EMSP President, John Golding
EMSP Web Alert
10-15% of people living with multiple sclerosis have the primary progressive form while 80% of
the remaining 85-90% have relapsing remitting MS and will develop secondary progressive MS
within 10 to 15 years after their diagnosis.
The International Progressive MS Collaborative aims to promote collaboration on a global scale
using an integrated, multi-disciplinary effort to support the best research and effective translation of
research results into therapies for progressive MS.
NEWS FROM OUR STAKEHOLDERS
Looking ahead, EMSP would like to inform its members and partners about next year's Annual
Congress of RiMS, the European Network for best practice and research in rehabilitation in MS,
which will take place in Brighton, on 6–7 June 2014. The event, held for the first time in the UK, will
be hosted by the MS Trust and the UCL Institute for Neurology. It will be attended by worldrenowned authorities who will present the latest research into rehabilitation and MS. Bookings will
open on 4 November. To make sure you stay ahead of the queue for the full programme sign up
here.
CHANGES AT EMSP
The European Multiple Sclerosis Platform entered
the European Month of the Brain welcoming two
new members to its Brussels-based team.
Starting April, Andreea Antonovici has taken the role of PR and Events Coordinator of EMSP.
Andreea has 4 years’ experience in event planning –she has organised seminars, conferences, nongovernmental festivals as well social events. Andreea holds a Master’s Degree in European Studies at
the Catholic University of Leuven and a Bachelor’s Degree in International Economics and Business
from the Academy of Economic Studies in Bucharest. During her university years, Andreea did
voluntary work for a number of non-governmental organisations and undertook an internship at the
United Nations.
Also starting April, Claudiu Berbece is the new Communications Officer Intern. Claudiu brings with
him a 7 years’ experience as a journalist in Romania, working in print, radio and online press, most
significantly as a reporter for the Romanian Office of BBC World Service and as an editor for the news
website of the Romanian National Television. He also previously completed a 5-months paid
traineeship for the Press Office of the Council of the European Union. Claudiu has a Bachelor’s
Degree in Journalism and Communications at the University of Bucharest.
EMSP Web Alert
“This Web Alert arises from the work programme EMSP_FY2013 which has received funding from
the European Union in the framework of the Health Programme. Sole responsibility of the
information contained herein lies with the author and the Executive Agency is not responsible for
any use that may be made of this information.”